Every month we will have a drawing to select one person to be our RARE Super Hero. The winner of the drawing will get a special mask made for them from Crystal’s Creations. Go to our RARE Super Hero’s page to submit your entry!

We go through so many difficult times as a special needs parent, especially with a disorder no one understands. There is nothing more amazing than knowing a child with special needs, they teach you how to appreciate the things we all stop paying attention...

The door swung open, and the words I will never forget came spewing from his mouth like he was so detached from me that my feelings did not matter. ” your child has a rare disorder called Schizencephaly. He is missing part of his brain, and we are...

We need research! The one thing you hate the most about Schizencephaly is the not knowing. One day my daughter WILL grow up and she deserves to know more about it. — Valentina Excerpt from the Book: Schizencephaly – Angels with Broken Wings...

The doctor told me I had Schizencephaly. He explained the gist of the disorder to me and said I needed to see a neurologist to get further details. I left there in tears and feeling very alone. I was unsure what to think, but at least I finally had some...

Even though Lily was at risk to have seizures, it was so emotionally overwhelming when the first one happened, There is no amount of knowledge that can prepare you for seeing your child seizing. It is truly like they are just gone. — Lily Bomba...

I remember the first day I received Yanni’s diagnosis, And I am so glad the doctor was wrong and that I heard those words about resilience from our neurologist. The brain is resilient. And our lives are definitely resilient if we remember to take...

On those days that you feel the warm sun briefly when the chilly wind stops for a moment; that is my Jen. She is reminding me that through the clouds there is always light, and the light fills the heart much faster than the dark. — Jennifer Toby...

Ada and I tend to be in our little world most of the time. In this world of ours, Ada-Lily is a typical child. I do not pretend that she isn’t disabled, the way she is has become my normal. It isn’t until we are around other people that I...

Help Line for Families

We Are R.A.R.E. not only looks at providing help for the individuals with RARE disorders but their families who care for them too. We understand the stress and hardships involved to support our love ones. You are not alone! Please reach out to us at help.me@wearerare.org if you need someone to talk to for emotional support.

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HELP LINE FOR FAMILIES

We Are R.A.R.E. not only looks at providing help for the individuals with RARE disorders but their families who care for them too. We understand the stress and hardships involved to support our love ones. You are not alone! Please reach out to us at contact-us@wearerare.org if you need someone to talk to for emotional support.